UPDATE February 2016: The hearing of QMUL’s appeal is scheduled for 20-22 April 2016 in central London. Judgment is not normally given at the time of the hearing but is distributed up to three weeks later. If QMUL’s appeal does not succeed and they are ordered to release the data, they can still appeal to the next level, the Upper Tribunal.

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Background

I have lived with the illness myalgic encephalomyelitis (ME) for nearly 35 years. The condition is also (misleadingly) known as “Chronic Fatigue Syndrome” and is therefore often referred to as “ME/CFS” or “CFS/ME”. For more information see “About“.

Ever since the results of this £5 million (US$8m) publicly-funded trial were published by The Lancet in 2011, patients have been attempting to gain access to the trial data as the results were spun in a surprisingly positive light. In 2014, I made a request under the Freedom of Information Act (FOIA) to ascertain the number of requests which had been made in total. The answer wasn’t clear but the figure seemed to be in the region of 34 requests (with approximately 150 individual items within those 34 requests). However, very little data has been released so far and patient groups are still puzzled by how the results have continued to be framed in such positive terms.

Professor White has also used patients’ efforts to access trial information as a platform from which to make spurious claims of harassment by ME patients against members of the PACE team. He has also suggested that patients have been orchestrating a “campaign to discredit the trial”. Paragraphs 31 and 33 of an earlier decision notice stated that: “Professor White has made it clear that the requests are causing annoyance and frustration both to his colleagues and himself who have to deal with the requests. He has stated that he believes that the requests are clearly part of a campaign to discredit the trial and are not in the public interest…….QMUL has advised that the effect of these requests has been that the team involved in the PACE trial, and in particular the professor involved, now feel harassed and believe that the requests are vexatious in nature.”

In March 2014, the requestor in this case, Alem Matthees, sought the following trial data from Queen Mary University of London (QMUL). QMUL is the relevant public authority for the purposes of making FOIA requests about the PACE Trial:

QMUL refused to provide the information at the initial request and the internal review stages. In December 2014, the requestor (now “the complainant”) complained to the Information Commissioner (IC) about the way the request had been handled. The IC published his decision on 27 October 2015. You can read the full 30-page decision notice here. It is a meticulously drafted decision which comprehensively dismantles QMUL’s arguments and orders disclosure of the data to the complainant.

The decision notice sets out the submissions by QMUL in some detail. In an apparent act of increasing desperation, the University argued that several of the exemptions in FOIA applied and therefore the information should be withheld. Perhaps the most egregious example was an attempt to argue that a section of the Act which was not even in force at the time of the original request could be used as a reason to withhold the data. There is a presumption in English law that legislation does not apply retrospectively, unless otherwise specified which, in this case, it was not.

There are some notable quotes from QMUL’s submissions in the decision notice; this section is a particular favourite of mine:

“The PACE trial has been subject to extreme scrutiny and opponents have been against it for several years. There has been a concerted effort by a vocal minority whose views as to the causes and treatment of CFS/ME do not comport with the PACE trial and who, it is QMUL’s belief, are trying to discredit the trial. Indeed, as noted by the editor of the Lancet, after the 2011 paper’s publication, the nature of this comprised not a ‘scientific debate’ but an “orchestrated response trying to undermine the credibility of the study from patient groups [and]… also the credibility of the investigators and that’s what I think is one of the other alarming aspects of this. This isn’t a purely scientific debate; this is going to the heart of the integrity of the scientists who conducted this study.” (Health Report, Comparison of treatments for chronic fatigue syndrome – the PACE trial (National Radio, Australian Broadcast Company April 18, 2011) interview of [Lancet editor] Richard Horton and [Professor] Michael Sharpe).

Further, in this interview Michael Sharpe, a Co-Principal Investigator of the trial, states “I think the first thing to say here is that we recruited 640 patients into this trial and there wasn’t a high rate of refusal of taking part in the trial and those patients remarkably, a vast majority of them stayed right through to the end of the trial, they accepted the treatments and they completed our outcome data. So I think it’s very important to remember that if you go out there to the clinics that most patients with chronic fatigue syndrome, all they want is the evidence for what they have to do. There is parallel to that, a very vociferous series of websites and so on, it’s not really the same world as the ordinary patient coming to the clinic. They have been quite hostile in many ways to the findings of the trial and unfortunately also to the people who’ve undertaken the trial and collaborated with the trial,” and Richard Horton comments,

“I think this is where one sees a real fracture in the patient community. One is seeing a very substantial number of patients very willing to engage in this study, desperate to get good evidence on which to base their future treatment but one sees a fairly small, but highly organised, very vocal and very damaging group of individuals who have I would say actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients. This community actively seeks to identify and attack those who are associated with the PACE trial.”

On reading this, one might conclude that both factual accuracy and the English language are taking a major hit here; so also is respect for a patient community which has been disproportionately neglected, abused and stigmatised for decades.

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On 26 November 2015, it became apparent that QMUL was appealing the decision of the IC. The appeal is to the First-Tier Tribunal (Information Rights). The complainant can choose whether or not to be joined as a party. It will be some months before we know the outcome of that appeal.

A final word of caution: we have been through this scenario once before, when QMUL appealed the IC’s decision in a case from 2013. QMUL’s appeal was upheld, albeit in a curiously ambivalent Tribunal judgment. Hopefully, this time there will be a better result for the international ME community.

As you have pointed out before, it is ever so revealing that the approach to FOIA by those who have actively been working against science and any meaningful progress in the ME field is identical on both sides of the Atlantic: utter disdain for FOIA and the rights and values it is meant to protect. No matter how little merit an anti-FOIA position has, it is still fiercely and shamelessly put forward (here, by QMUL; in the US, by HHS and its component agencies, such as NIH) in the hope that something will “stick” and the rights of FOIA requesters will be trampled up on once again. It’s a strategy that has, for the most part, worked extremely well for those who favor secrecy over transparency. However, it puts on display the utter lack of integrity of those employing these reprehensible subterfuges and obfuscations. history will judge them harshly for doing so. (In the US, the tide has started to turn on those who champion end runs around FOIA rights and I predict we are about to see a similar trend in the UK.) So, Horton and Sharpe are correct, “this IS going to the heart of the integrity of the scientists who conducted this study.” [emphasis added]

The same thought had struck me about Horton and Sharpe’s remarks concerning the “integrity of the scientists”. The integrity of ME patients has been trashed for decades. It’s time for a reversal of fortune and reparations to those – past and present – whose lives have been destroyed.

Pure Soviet-style transformation of reality by White, Sharpe, QMUL, et al. In line wiith SMC. Soviet tyranny + crony capitalist ruthless greed = fascism. The fight did not end in 1945 or 1989: the struggle for justice will always be with us, everywhere.

Yes, it did expire on Monday, Russell (or possibly Tuesday: it depends on how you do the calculation; even lawyers differ on this point).

QMUL may have served Notice of Appeal on the Information Commissioner by then but the IC has only just informed the original complainant (who is not yet a party to the proceedings. Even if QMUL served it slightly late, they are unlikely to be penalised for that.

There has been a vast amount of misinformation and ill-informed speculation going around on social media. I gave up trying to correct it a long time ago but it’s very unhelpful.

I should have had some bets out on this. I’ve never thought they would release the data – they have nothing to gain and everything to lose. They will appeal, stall – and if necessary, misplace – that data. Right now they’re hoping the brouhaha over David Tullers piece on Vince Racaniello’s virology blog (Racaniello is a professor of virology at Columbia U in NYC), which shredded the PACE trial, will die down. It’s not going to.

But I think the ball is now in the Lancet’s court. How did this monstrosity get published in the first place? The happy face conclusion bears absolutely no resemblance whatsoever to what is IN the trial, and that’s obvious to anybody who doesn’t read it with rose-colored glasses. It should have been obvious to the editors of the journal.

So – Editors of the Lancet – how did this get published in the first place?

Damn straight I am hostile to psychobabble and fraudulent research, and anyone who promotes it. I am determined to stay alive long enough to see these criminals held to account in a court of law.

The Wesseley School has every reason to be afraid of exposure of their immense fraud. At the same time, it is ludicrous to think that such important people are shaking in their shoes from fear of patients who can hardly get to the toilet.